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I would like to thank Joseph J. Fins, M.D., for his guidance in writing this manuscript and for his continued dedication to mentoring countless others in medical ethics and the medical humanities, and the many patients who provided me the opportunity to learn from their experiences. Funding was provided by the Division of Medical Ethics at Weill Cornell Medical College and the Hospital for Special Surgery Fellowship in Biomedical Ethics.
In Confessions of a Knife, Richard Selzer gives a candid account of his life as a surgeon, divulging mistakes, regrets, impressions, and emotions in beautiful, metaphorical prose.1 I too have a confession to make about my experience as a neophyte physician, albeit less gracefully. When starting my fellowship in neuromuscular medicine several months ago, I thought I was ready to take on the challenges of the diseased and disabled, well practiced in my professional abilities after eight years of medical school and residency training. I was well poised in my skills of empathy. I was a listener. I knew how to think openly about my patients. I gave excellent quality care. Or, so I thought.
Now I will be candid. I met a patient on my first day of fellowship, and I saw my best of intentions thwarted. She was a 36-year-old woman with facioscapulohumeral dystrophy (FSHD), a disease with a characteristically normal life expectancy and a relatively more benign course compared to its other muscular dystrophy counterparts. Pleasant and eloquent, she told me that she loved to dance as a child, her narrative proudly affirmed by her similarly afflicted mother. However, in her late teens she began progressively weakening, and her abilities gradually declined. She was left with a slight waddle in her gait, an inability to raise her arms above her head, and the wasting away of various face, back, arm, and leg muscles. But this did not stop her. She graduated from college with a degree in art history and landed a dream job as a cultural critic for a well-regarded magazine.2
As I reflect back on our first encounter, I am sure the confounded look on my face did not instill much confidence in my new patient. I thought, she seems so...